Lights campaign supports one-of-a-kind home

A local non-profit organization is hoping the community will help light up a few bulbs this holiday season to support those battling the debilitating effects of Lou Gehrig’s disease.

The ALS Society of Manitoba plans to turn the power on its annual Lite Up A Life campaign Sat., Dec. 1, for the Brummitt-Feasby House in St. James.

MATT PREPROST

Got a light? Brian Campbell and Diana Rasmussen of the ALS Society of Manitoba are hoping to raise $4,000 during this year’s Lite Up A Life campaign.

The organization is hoping to raise up to $4,000 this season by selling bulbs that will adorn the trees in the home’s front yard.

The money will help pay to keep the house operating, and fund projects such as purchasing a $30,000 backup generator to keep the home’s technological equipment running during a power failure.

"It’s vital to our clients," said Brian Campbell, a spokesperson for the organization.

"If we could break $4,000 we would be ecstatic. I don’t care how many bulbs we have to put on the trees."

Nestled along the banks of Sturgeon Creek on Kirby Drive, the 2,000-sq. ft. house has become a vital resource for the more than 260 Manitobans living with amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease.

ALS degenerates the body’s motor neurons, essentially cutting off the brain’s control over muscle movement, confining sufferers to a wheelchair or bed. There is no known cause or cure and treatment options are limited. Most sufferers die within two to five years.

With four beds, round-the-clock care and medical supplies, the home has been a welcome respite for those in the final days of battling the disease, Campbell said.

"People consider it a home. It’s not like a hospital; it’s not like a hospice. We handle medical needs there, but it’s run like a home," he said, noting ALS agencies in the U.S. and Europe have been trying to replicate the model.

"For people that can’t stay at their own home anymore because of their care needs, it’s a good second choice for them.

"People would rather be there than at a hospital waiting for those final days," he said.

Lynn Brown and Faith Johnston, whose stepmother Dorothy Brummitt died of ALS, donated the house to the society, which opened in 2001 following renovations.

It costs the society, headquartered at 493 Madison St., $500,000 a year to operate. The Winnipeg Regional Health Authority funds the staff wages.

The agency would like to open a second home — Campbell notes ALS is on the rise in rural Manitoba — however, unless the house was donated, the financial burden would be impossibleto undertake.

"Would this happen again? We’d love to see (it) but can’t say that it will," he said.

The Lite Up A Life campaign runs Dec. 1 to Jan. 31, 2013. The organization will hold an official lighting ceremony Wed., Dec. 12 at 7 p.m.

The society is selling three bulbs for $5 or seven bulbs for $10. Those wishing to donate can also light an entire tree (150 bulbs) for $150.

You can comment on most stories on winnipegfreepress.com. You can also agree or disagree with other comments.
All you need to do is be a Winnipeg Free Press print or e-edition subscriber to join the conversation and give your feedback.